The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</a>
Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope
pediatric; palliative care; end-of-life; bereavement; music therapy; child life specialist; legacy making; mementos; memory making; parental/caregiver grief
Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of legacy making to parents, (2) parent satisfaction, and (3) parent utilization of the project. Design: Eko CORE (Eko Devices, Inc., Berkeley, CA), a digital stethoscope that generates a phonocardiogram, a graphical representation of S1 and S2 heart sounds, was used to record children's heartbeats as they approached end of life. The heartbeat was then overlaid to a song or voice recording or kept as a stand-alone file. An artistic embellishment of the phonocardiogram was also created. Parents were surveyed about their experience with the Music Therapy Heart Sounds (MTHS) program. Twelve parents completed the survey. Setting/subjects: Tertiary care children's hospital. The subjects were bereaved parents. Measurements: Five-question survey. Institutional Review Board review exempt. Results: All respondents would recommend the MTHS program to other families experiencing end-of-life decision making. Forty-two percent (N = 5) heard about the program from pediatric palliative physicians, and 50% (N = 6) heard about it from therapists such as music or child life. The respondents varied in how often they utilized their child's heartbeat recordings: 25% (N = 3) viewed or listened monthly, 33% (N = 4) not at all, 17% (N = 2) almost weekly, 17% less than monthly, and 8% (N = 1) daily. Conclusion: The MTHS program is an easy-to-implement and cost-effective way to perform legacy making that bereaved parents recommend for other families.
Andrews E; Hayes A; Cerulli L; Miller EG; Slamon N
Palliative Medicine Reports
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/pmr.2020.0028" target="_blank" rel="noreferrer noopener">10.1089/pmr.2020.0028</a>
Let's Work Together: Collaborative Research Is Needed to Overcome Difficulty Enrolling Families for Bereaved Sibling Research.
Miller EG; Hildenbrand AK; Taggi-Pinto A; Alderfer MA
Journal of pain and symptom management
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.03.015</a>
Use Of Telehealth In Pediatric Palliative Care
Pediatrics; Telecommunications; Telehealth; Telemedicine
OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to access services. We present cases wherein telehealth was used to provide counseling services to patients who would not have been able to receive this service. METHODS: We discuss cases of telehealth use for patient and family counseling in the setting of palliative care and bereavement follow-up. Patients who live a great distance from the hospital with limited access to services were followed by a hospital-based pediatric palliative care team. Patients and families gave feedback after use of telehealth for counseling services. RESULTS: Counseling through telehealth by our hospital-based palliative care social worker was successful for all parties involved: patient, family, and social worker. CONCLUSIONS: Telehealth helps relieve disparity in access to services and care, which is particularly problematic in pediatrics and mental health. For the patients in this case series, it was an effective modality to receive counseling services and meet needs that otherwise would not have been addressed.
Winegard B; Miller EG; Slamon NB
Telemedicine Journal and E-Health
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1089/tmj.2016.0251